I started back on the quantified self track later in February. A few times a year (or more) I get data hungry, so I started using Optimized again as a starting point. It’s a great little app, and between that and my Life Priority List (hardest. task. ever.), I set a handful (more than a handful) of pretty straightforward goals. Pinpointing where I spent my time helped with both the goals and the priority list.

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Graph from Optimized on where I spend my time. Note that this is skewed because the app kept deleting my data. [Health 60.3%, creativity 2.3%, pleasure 10.8% (which includes things like Skype and reading), and routine 26.6%] From here, I get a brief overview that I’d like to spend more time on creativity.

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Optimized then offers correlations and shows how accurate they may or may not be.

The more time you log, the more accurate they become. My overall mood correlates positively with the time i spend on health. I can later further break this down and see how, for example, including more cycling in my routine affects my mood. Sometimes, however, it might be more useful for me to log cycling as both “cycling” and “exercise” to get a bigger picture of how exercise in general maps out onto mood, for example, so I could do the same for skating, walking, or dance.
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Both pictures also offer a disclaimer about correlation—that correlation ≠ causation. But, it’s a helpful starting point. In the above, the app has determined that time spent on routine activities correlate positively with time spent on health activities by 25.6%, but notes that this correlation is only based on 19 data points… so it’s likely not too accurate. Yet.

I did pretty okay getting rolling on the goals and the logging in the last week and a bit of February, and I’ll continue that process in March. I’ve got a badass spreadsheet even, very loosely based on the life goals spreadsheet tutorial from Ryan Dube.

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Note that even though I have my goals defined, certain ones—like sleep—probably do better with context. For now, I’m just interested in the raw numbers and can map it out against other factors later. Cycling, however, based on my not-too-intensive 40 minute/week goal, isn’t too lofty of a goal to achieve (which means I should at least have 20 minutes this week considering it is Wednesday, no? :]) 

Here’s where I’m at in terms of goals for March. While I set goals within Optimized (which Ari, the happy little robot, will tell me about), the nice thing about this system via Excel is that I can map things out in terms of progress. With the chart above, you’ll see each bar shows how close I was to my goal of 7 hours 35 minutes (7.56 hours) of sleep, or the progress towards my weekly goal for cycling. Certain goals also are monthly, which means I have a weekly progress-towards-monthly-goal bar, and then a final bar. 

Because nerd things, duh.

These are the goals I’ve got all mapped out in spreadsheet form for March, broken into the categories from from Optimized over there. Health, Routine, Pleasure and Creativity. Below, I’ve vaguely split the lists into physical, spiritual/emotional (/creative), social, occupational, and intellectual wellness.

  • Sleep, about 7.5 hours a night
  • Exercise [total: 21 minutes, 4 days per week—not a lot but more than I am doing]
    • Cycling – 40 minutes per week
    • Dance – 1 hour per month
    • Yoga – 30 minutes per week (I should get on that.
  • Meds, 5 minutes a day (this is approximate but should be enough to mean I am taking everything I should be taking… including the often-forgotten midday doses.)
  • Brush teeth, 4 minutes a day (2 minutes, twice a day)
  • Meditation, 20 minutes per week
  • Journaling, 5 minutes per day
  • Personal blog, 1 hour/week (so you’ll be seeing more of me)
  • Creating, 1 hour/week (this is called visual arts in Optimized)
  • Movie making – 1 hour/month
  • Spend more time with more people (I quantified this as “4 hours per month with people from the “friends” category in Optimized.
  • Look for [more] work, 1 hour per week
  • Work – blogging, 3 hours per week
  • Creative writing – 20 minutes/day (may overlap with personal blogging, etc.)
  • Log finances – 5 minutes/day (I’m using an app called DayCost for this. All manual because I am not into a 3rd party app connecting to my banks.)
  • Reading for fun – 30 minutes per week
  • Web surfing – maximum 6 hours per day (let’s be honest… this can suck a lot of time but also my work kind of overlaps with web surfing sometimes.)
It’s a pretty ambitious list so the rationale for the Excel spreadsheet is to see how close I get, and how to adjust these things later on.

I also have a to-do list of things I never accomplish. So, here’s what I’ve got on there because maybe that will make me accountable.

  • Smart Girls with ADHD Guest Post (184 days ago)
  • Another item for SGwADHD (66 days ago)
  • Buy new bed skirt (Why are these things so hard to find? 56 days ago)
  • Read and review book (I am the worst person to give an ARC to, clearly – 45 days ago)
  • Final eCare Smart blog post (21 days ago – waiting on an e-mail)
  • Buy spray paint for pegboard (12 days ago)
  • Buy hooks for pegboard (12 days ago)
  • E-mail organ donor/transplant interview (10 days ago)

So. March.
Here goes.

From Wikipedia:

self care is any necessary human regulatory function which is under individual control, deliberate and self-initiated.
A theme I intersect with time and time again is that of intention -> action. For nearly four years now, I’ve struggled with actually achieving the things I’ve wanted to, and been cognizant of that, of the concept above.
Because “good intentions fill my life, but they’re not good enough.” (Life’s Passing Me By, Addison Road)
Repeatedly, intentional self-care is a thing that I neglect. I wrote about it again semi-recently: nutrition, exercise, writing, mindfulness, slowing down and appreciating even the slow moments.
Last year, I tried out (unsuccessfully) Self Tracking October. And back in early August, I began to percolate on Self Care September. (Big difference!)
Except, there will be low stress in blogging it. Because that wouldn’t really be at all conducive to my overall wellbeing, no?

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I’m not blogging everyday, most likely. But, there’s a framework for if/when I do blog if I lack ideas. Because that’s been common as of late. I’m thinking on a pseudo-schedule for theming days (but I’m not sure. You know, something along the lines of Thankful Thursday and Music Monday and #SelfCareSunday and Writing Wednesday and that sort of jazz). The Wikipedia article also notes self-care as an important part of managing chronic disease—don’t I know it, even if I don’t think about it this way. It’ll be something, among the many things, that I work at reframing my perspective of this month. September will, I hope, be a kickstarter to doing the things I want to accomplish—because I may have ADHD to contend with too, but that’s not stopping me. Look, the dude who invented IKEA did that with ADHD, okay?
How did I start out September?
  • I started writing this at 12:56 AM, laying in bed, while characteristically not following through on my plans to “go to bed at a reasonable time”
  • I slept 8 hours and 46 minutes (98% efficiency per SleepCycle)
  • I cleaned my AeroChamber for the first time in maybe a year? [Ick…]
  • I walked to the store and bought things for organizing my room (a work in progress)
  • I talked to a friend going through a pretty stressful time on the phone the walk; I ran into my former boss at the dollar store and we’re doing breakfast in a few weeks.
  • I focused harder on the words in the music I was listening to—and shared it with a friend who I thought it might resonate with.
  • I hit my 7500 step goal on Fitbit (I decreased it from 10K awhile back because what’s the point of a goal that you never hit?)
  • I actually ate vegetables at lunch today (in the form of minestrone soup, but hey, it was homemade)
  • I learned how to empty the lint trap of the dryer. (Lint is weird, y’all)
  • I listened to a livestream concert and book reading by Jenny Simmons as she released her new [non-kickstarter!] book today. Re-reading The Road to Becoming is again on my list for September.
  • I prayed for the first time in probably months alongside Jenny and those attending the livestream concert tonight. And it felt like something.
  • I signed a contract for a new blogging gig (that I’ll tell you guys about soon!)
  • I wrote this, I did some writing for the IDentityDoctor blog, and intend to do another half hour of some sort of writing project before I go to bed today.
  • I’m not sure I checked anything off of my to-do list, but, I got one-eigteenth of an item done. Progress is progress.
Writing this down is just one more step towards getting where I want to be. Because all of these things fit into some category of the concept we call wellness–these things can, should, and now, because I am reflecting on them, do mean something to me today. They mean I’m not letting today pass me by.
I feel like I started today off fairly strong. I’m interested in seeing where the rest of the month goes. Especially as I try to pay more attention to what’s around me–and how that affects what’s going on inside me, and how I respond to it.
In September: I want to use more moments fully–embrace them. I want to write more words and take more pictures and meditate and exercise and sing and dance. I want to hug and laugh and cry with people and share in and appreciate their stories. I want to know myself better by feeling better and feeling more and sharing more and doing more, but finding balance in that. I want to appreciate the world around me more fully; have a few more coffee dates with Jesus like I used to, and be more connected.
Through being intentional, through self-care, I want to find the pieces of myself I’ve misplaced in the chaos. I am to start something this September that lasts far beyond these 30 days…

Airports and airplanes are among my favourite things. Once those six-flights-in-six-weeks culminate, if someone wants to fly me away again, I’m down.

YWG -> YYZ -> YWG -> YYZ -> YWG -> DEN.

[…Denver yet to happen. Next Monday.]

First was Senior Goalball Nationals April 17-19th. We didn’t win any games, but, I heard from another coach that he hadn’t seen Manitoba score seven goals in a game for about seven years, so, I feel okay about that! Plus Steve, Gerry and I got free stuff at the new Yorkdale Shopping Centre Starbucks (they’re left of me in the picture, #1 and #9, respectively), met Dia for coffee, went to the CN Tower, Purdy’s chocolate, and the Lego Store!

(Thanks to Jamie for snapping this picture when she and Larry came out to check out the games!)

Then less than two weeks after I’d returned, I was back on a 5:15 flight out to Toronto last Sunday morning. The official purpose of the trip was to attend an all-day meeting of the National Asthma Patient Alliance Executive Committee on Monday, the Clearing the Air Conference Gala Monday evening, and the Asthma Society of Canada’s 2nd annual World Asthma Day conference on Tuesday—World Asthma Day.

Sunday.

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Goodbye, Winnipeg…

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Hello, Toronto! (Again!)

My flight arrived 25 minutes early—it was really only the beginning of Transit Nirvana: I checked my phone upon arriving at the Terminal 3 bus stop, and the bus would be there in 3 minutes. I got off the bus at Kipling Station and after a moment of confusion with an out-of-order track, I was on my way to Jane. From there, I’d planned to walk to Humbercrest United Church, but, because of Transit Nirvana, the appropriate bus was sitting outside, so, a transfer it was. Beautiful.

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This picture was my “I’m almost there!!!” text to Jess (below!), who I connected with on Twitter a few years ago. Getting in to Toronto at 8:30 AM on a Sunday meant it only made sense to go to church (…for the first time in two years :]).

(Getting into Toronto at 8:30 also meant that I was awake at 3:06 AM, thus the evident tiredness here!
Selfie credit to Jessica!)

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Listening to the choir warm up before the service! I may have also had Live’s “The Distance” going through my head here:

i’ve been to pretty buildings / all in search of You / i have lit all the candles, sat in all the pews
[…] oh, the distance makes me uncomfortable / guess it’s natural to feel this way / let’s hold out for something sweeter: spread these wings and fly.

I’d discovered while exploring where the church was that my grandma’s friend Alice lived nearby. After the service (interestingly, Jess spoke on John 15, which we’d explored one weekend at a youth leader’s retreat a few years ago—read: five years ago. How did THAT happen?), I met up with Alice at a coffee shop nearby for a couple of hours.

alice and kerri

 

(Got this picture in the mail from Alice 05/15!)

I reconvened with Jess after her meetings finished to go for lunch and do a drive through High Park to see if the cherry blossoms were out yet. The park was busy, but I felt super lucky to see the cherry blossoms—a few days on either side and I may not have been able to!)

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 Jess dropped me off at a subway station, and while I almost got on the train going in the wrong direction (despite her telling me to go the opposite way!), I made another Transit Nirvana-esque transfer at Bloor-Yonge Station to college… and then proceeded to walk past the hotel and almost back to the station I’d transferred at. Hey, I figure I’d done pretty good up till that point—thanks Google Maps!

Shortly after arriving at the Courtyard Marriott downtown, I texted Stacey, a NAPA executive member from BC who had also arrived on Sunday. We connected in the lobby, went to the Second Cup in the hotel, and then went on a walk around downtown, including finding a Loblaw grocery store, and then returning to the Second Cup to buy dinner.

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(We got lost a bit, but that just means more Fitbit steps!)

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The sole purpose of my ice bucket was to house my berries—my chocolate milk couldn’t even stay in there so I just hoped it had enough preservatives in it ;). I was mostly unimpressed that Gerry wasn’t there to get ice for me ;).

Monday.

I woke up at 7:29 Eastern (6:29 Central—clearly I was tired as I went to bed at what my body would have interpreted as 10:06 PM, and I crashed into sleep rapidly according to SleepCycle), and got ready for the day. Did I mention the weird layout of my room? Yeah.)

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I went on a journey for a plain collared shirt in white or black several days before going to Toronto. I found one such shirt and the small was too big, so I had to resort to getting a Winnipeg Jets golf shirt. Represent! I got business casual down ;).

I got a text from Sue saying she had arrived at the hotel after an early flight from New Brunswick, and headed down to the Second Cup to meet her before my meeting with Erika and Vibhas. I am also that person who gave everyone the keys to my hotel room—Dia actually went up there to work, even! At one point, Erika and Dia had both of my keys and I had none, which was kind of amusing. Erika, Vibhas and I discussed the Asthma in Schools subcommittee meeting later that afternoon, and I thought it was awesome that we had some input from Sue as well, as she was taking part in the Strategic Planning discussion, so my hope was that she could use some of our previous struggles to help influence that discussion!

We started our National Asthma Patient Alliance Executive meeting at 11:30. Dia, as Chair, was keeping things rolling as you can see below.

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From this point, I think the best way I can summarize the bulk of the asthma/National Asthma Patient Alliance/advocacy/World Asthma Day related content is through tweets—real talk in “real time”. I’ve embedded a selection [a hefty selection!] below, and then will return with added commentary (I’ve embedded some commentary through Storify, also!)



(Be sure to click through on “Read next page” to see the last few gala posts, and tweets from the Clearing the Air summit!)

I set up #ClearAir15 on Symplur to give us a sense of how things were going Twitter-wise (no, Noah, I did not just set that up to bug you about my insane amount of tweeting, although that was a nice side-bonus—ADHD lends itself well to live-tweeting mostly), and because I like graphs and things (so does Rob, I learned). I am not really sure whether I expected more or fewer people tweeting (I am, after all, MedX biased, which is the craziest tweeting conference evah).

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Seems about right.

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Sorry, Noah (tweeting as @AsthmaSociety). Final stats say Erika and I out-tweeted you :]. Putting the e in ePatients.
(Of course, the ASC account came out ahead in Top 10 by Impressions. Also, I am glad to see more people tweeting at both Glen Murray and the Asthma Society than me, because that only makes sense.)

My favourite session of the day was Dr. Sarah Henderson’s breakout session on extreme summers and respiratory health. What I found most interesting about this, outside of the graph included above that compared Ventolin dispensed to levels of specific particulate matter in the air (mind-blowing to see that they were able to very much trend peaks in Ventolin dispenses at British Columbia pharmacies [and thus, likely, use of rescue medicine] at the same time as particulate matter from forest fire smoke), and how extreme heat + allergens + forest fires [particulate matter] = higher incidence of respiratory issues—I will say the most interesting part to me was not all of the above, but that Dr. Henderson actually dragged illicit drug use into the frame, noting that not only is use of street drugs a potential cause of death, but the way cocaine use alters the body’s response to heat means that cocaine users are even more likely to die during extreme heat than they might be in the same circumstances but in cooler weather. (Oh, I also got to introduce Sarah AND MENTION PENGUINS. Dr. Henderson is a cool lady.)

My Twitter slowdown came when money and politics were being discussed. I was not only lost, but disappointed when instead of using the policy discussion for good, it came to a political showdown that did not just highlight the good, it began slamming the Tories—yes, I’m really left-wing myself, but a health conference is certainly not the place to alienate those who may not be.

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And that is when Jess and I chose to take selfies instead of repeatedly slamming our heads into the table whilst trying not to breathe in too deeply around the woman who decided it was a good idea to drown herself in perfume before attending an asthma event? (Okay, maybe I was irritated by more than one force…). Anyways, moving back to the positives.

The final session of the day was a patient panel, including two NAPA executive members, Erika and Chantale. This discussion generated a lot of good questions, and I really just wished that the patient perspective was not included last. I think it was a good way to finish the conference, however, I think the patient perspective needed to be woven in throughout the day, not just at the end (by which point many attendees had left, as well). Once again, maybe a “MedicineX sets a precedent for me” thing, but, if we ever hope to see a world where patients are truly engaged in a conversation, and not just—whether legitimately or unintentionally seen as—an afterthought, this needs to happen: we may all be an n=1, but we are why change needs to happen.

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Jess and I following the conference—photo credit to Rob.

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Rob and I (Rob actually recruited me to the exec when he was working for the ASC.
We tried to recreate a picture from Quebec in 2012, when we were both the students taking all the pens from the conference room right before he started law school. And now I’ve also graduated and he is an almost-lawyer!)
Photo credit to Jess.

But, until then, until the change does happen and through that process, I’ll have many amazing friends to share the journey with. Before she pointed me in the direction of a train (look, I only stayed on going the wrong way for one stop!) Jess and I discussed the day over margherita pizzas (thanks, Jess!).

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$3.50 iced tea from Pearson and airplane shirt? Check. (After wandering out of the secure area to not-find Sue because I was not allowed in concourse D? Yeah, check.)

…and, of course, looking back with there realization that if we did not recognize that we are the ones who will help guide change being created, if we didn’t have this stupid disease, we wouldn’t have been sitting at the same table in Toronto for a second time in three days digging through all the topics that we did :). The conversation, the people, and the steps towards change—however small—are what matter.

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Disclosure: The Asthma Society of Canada, via its funding partners (pharma), covered the cost of airfare, one night of hotel, gala and conference admission, and some meals, for National Asthma Patient Alliance Executive Committee members to attend the NAPA meetings and Clearing the Air conference in Toronto. I was not asked to write this post, nor obligated to provide a positive review (as you can tell, probably). 

All tweets cited above as my own are completely that, including mentions of my engagement with both NAPA as present Vice Chair, and the Canadian Severe Asthma Network, as Patient Lead, are based on my own desires to identify [within] these roles/groups. I receive no added benefit in doing so, I just think they’re good people[/things].

Most of the time, I try to be of the voice that life with chronic disease can still be awesome.

But that doesn’t mean chronic disease doesn’t suck.

A couple years ago, my friend Chris launched My Diabetes Secret. An innocent question from him lead to a discussion, and then… to this:

My Chronic Disease Secret.

“A safe place to share your chronic disease secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.”

I like this a lot.

Huge props to Chris for investing his time in setting up these projects.

Share your story. Even if nobody knows it’s yours.
Or if that’s too hard, share. Just read, even.
And keep going. If you need them, there are resources, people, who can help—even if you just want to type.

I hope you’ll check it out.

This morning, I was helping (or not helping, as the case may be) with the set-up of a new website. Two provinces away on the phone was the doctor I was “assisting” to navigate a new WordPress install.

[Note: She ended up calling tech support, so I can’t say I was all that helpful ;).]

During this call, though, she said “Thank you for being so patient!”

While this was in reference to the understandable frustrations of technology and distance (1400 kilometres is a bit of a distance to lend support on a host I’d never used!), perhaps it should be used in different patient-doctor scenarios.

How many times has your doctor (as a patient)/have you (as a physician) entered the room a) late, b) visibly stressed, c) without having consulted your notes first, or d) all of the above?

In any of these situations, I’d much rather hear “Thank you for being so patient,” over “Sorry”. Being thanked values my time, energy and investment into being a patient. Apologies mean little when they’re overused: apologize when you, as a healthcare provider, have screwed up; when something has happened and you could have done better, acknowledge it! Help reinstate the value of being truly sorry—we can tell when you’re being sincere, anyways.  Chronic patients realize that these things—being late, stressed, needing a second to check our charts—are facts of life in the healthcare system. It’s why I am reasonably patient (and pleasant) as much as I can be when dealing with my medical team, and make the effort to thank every single person I encounter in the hospital or clinic whenever possible: I appreciate the work you do, that these professions do not have nearly enough resources, and that everyone taking care of me has far more than me to think about. I want the people caring for me to know that.

And just as I, as a patient, appreciate the work that healthcare professionals do, I’d much rather the apologies be saved for when they’re truly needed, and instead, my experience be recognized and appreciated.

Thank you for being so patient,” works for me.